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2016 was not a banner year for many and I will admit that it has been THE worst year that I, personally, have had in quite a long time – quite a very long time.

Instead of running a post with a list of my top 5 (or 10) posts in 2016 – I think I am just going to begin 2017 re-running the top 5 – one each day. Hopefully by the time I finish, I will maybe feel like writing something new. I have not really been in the mood for that either lately.

Full Disclosure; I did not receive (or it is possible that I deleted it accidentally) the official WordPress end-of-year notification so I am going strictly by my stats and by the stats alone, there are 3 that were not written in 2016. Technically the post below is # 8, but #5 in new posts.

The following was written after my step-father’s funeral.

The aftermath…..

I wrote about the passing of my step-father and DC’s understanding of the situation in an earlier post (Understanding Death is not like a Disney Movie). Not to diminish how difficult it may have been on anyone else in the family, but this was a very difficult time for DC and this blog for the most part is about DC and the way his autism affects him and his life. It is about the way we go about things and the way he handles situations.

I have said before that I do not always look for accommodations for DC – I want him to try everything. There are times when the “regular” way of doing things need to be adjusted a bit.

If he needs to stand in the receiving line with me, then he does.

Everything does not have to be done “by the book” or the way it has been done for years. Adjustments can be made and those adjustments should not be looked upon as failure. I understand that people who do not know any better actually think we can “train” our kids to do everything the way that they think it should be done or the way it has always been done or better yet, we should be able to train our children to control themselves at all times. No, but we can try to help them manage situations and manage the anxiety.

It helps him. I will try to find a spot where his flapping will not cause damage to anyone or anything. Letting him do these things helps him to calm himself down. Keeping him from doing these things to release his anxiety will only cause something more epic or disruptive later when he just can not control himself any longer.

Knowing my son, I decided that it would be easier on him and everyone in attendance, for him to stand in the receiving line with me at the wake on Friday. Yes, it would be a lot of pressure and hours of people shaking his hand or hugging him but I thought that might be easier than having him sit with Doug with nothing to do for hours. This was a brand new situation for him and I know my son. If sitting away from me, eventually he would begin yelling “Vickie*, come here please” or running through (trying to, anyway) the receiving line to get to me. If he couldn’t get to me or was redirected from trying to crash the line, he could have gotten quite loud. Standing with me in the line was definitely the lesser of two evils. If it got to be too much for him, Doug was there to take him outside for a break if need be. Because she gets it, my friend Carrie actually thought to bring him a few Kit Kats when she came through the line.

If he needs to eat Kit Kats in the receiving line to help get him through this, then he does.

I have to hand it to him though; he didn’t even try to open one until there was a lull in the line.

I have to say that he did exceptionally well. I could see that it was difficult but he held himself together. He was a bit agitated but really pretty much in control. Of course, he had to work hard to stay in control and he was very relieved when it was over.

Knowing how much he fought to keep himself together and what his reaction would be going back into the same situation the following morning, I talked with him at length about what would happen the next day. I explained that we would have to go back to that same room in the morning but we would not be there very long before we got back into the car to go to the church. I knew going back there was going to be very difficult for him. DC really does not have a great sense of time, so explaining that we would only be there for an hour does not really mean much to him – a little while, and not very long, seemed the way to go. But as much as he seemed to be listening to me and understanding, I was very worried about the next morning.

On Saturday morning, the family met at the restaurant where the reception would be held later, to meet the limo. He began to get anxious as soon as we got into the limo and the rain only added to his anxiety. I told him to do whatever he had to do while we were in the car – flap, yell, whatever. He did not want to hear any of it. He was in full blown anxiety mode before we even made it through the door of the funeral home. I asked him if he wanted to sit with Doug – he didn’t. He wanted to stay with me, but he could not control himself. I took him out to the lobby to let him get it out of his system – I asked him if he needed to flap – “NO”, I asked him if he needed a hug (more for the pressure than the actual hug) – “YES”, but it did not help. Each time he said he was ready and we went back in, it began all over again and back out to the lobby we went. We were still in the family only viewing part of the morning before the general public came in. For me, his “semi-meltdown*” would have been much easier if it had happened in a room full of strangers rather than just family (if that makes any sense). Over and above my growing anxiety over trying to keep him together, all I could think about was we were now trapped there without a car. What if he just could not pull himself together? I began thinking about our options to get back to the car during the second time-out in the lobby. Thankfully by the third lobby trip he seemed to begin calming down and we were able to go back inside for the duration. Once again,

if he needed to be in the receiving line with me, then that is where he was going to be

and if he needed to have his “Babes in Toyland” book with him, then that is what he needed to have.

He made it through the viewing and we got back into the limo to go to the church, still anxious, but he was able to control himself for the most part. The cemetery in the rain was not easy but we were not there very long. Arriving at the restaurant and seeing that our car was still there made him feel much better, less trapped I think and he was back to his old self.

This was a long couple of days for him and I really debated about going to my mother’s house on Sunday. Once again I did not listen to that little voice in my head and we went. He was already on the edge. Then came a comment “smiles and ice cream”, which led DC to believe there was ice cream. After convincing him that there was no ice cream, next came the insinuation that pizza was part of the food order that was going to be picked up. Although dinner had been ordered and was waiting to be picked up, pizza had never been part of that order. Was this supposed to be funny? A Joke? I can not even offer an explanation about this but not only was there no pizza, but there was not one single thing that he would even think of eating…. That was the end, the very end. He’d had enough. This “semi-meltdown*” was worse than the morning before.

People who are not around him on a regular basis are often surprised when/if they happen to witness an outburst but they happen all of the time, maybe not to this extreme anymore, but they do. His behavior was actually a surprise to the people in the house.

Really?

THIS IS AUTISM!*

I have never tried to mold him into someone else’s idea of “normal”. I have spent years trying to help him navigate situations in a way that he can handle without too much anxiety and disruption to others. For those who did not get the memo; there are going to be outbursts and times when he just simply can not control himself. THAT IS AUTISM! This was more extreme than usual but it is certainly not something that has not happened before. He knows what is happening and he knows he can not control himself, which only adds to his anxiety and makes him feel that much more worse. Keeping him from doing what he needs to do to get over it also makes matters worse. Unfortunately he was past the point of hugs (pressure) and flapping.

Then came the full sentence with correct pronoun “I just want to go home”. Asking to leave Grandma’s house is a very big deal for him. It is not something he would normally do, ever. But I got a full sentence with the correct pronoun. I knew he was serious… so that is exactly what we did.

He had a very difficult time the following day (Monday) and the next, especially in the morning. In other words, the mornings were brutal. By Wednesday we were pretty much back to our normal morning issues but not anything close to what we had been through during the days before.

I am sure that in addition to the anxiety of a whole new experience and a very long weekend, he also has many feelings and emotions about his Grandpa’s passing that he is not able to express. We talk about it often and I hope that if he does not completely understand, continuing to talk about it will help him understand eventually.

*****

*Vickie – Yes, DC does call me Vickie at times. He knows that he is an adult and assumes that he should call me by my “adult” name.

*Semi-Meltdown – I use that term because DC hasn’t had an actual full blown meltdown in years. I can only compare to what his meltdowns were like when he was younger and in comparison, this was “semi”. Although I did not go into detail about his actions, it was getting to be very close to the full meltdown.

*THIS IS AUTISM – This is HIS Autism. As the saying goes: “If you’ve met one person with Autism, you’ve met one person with Autism”

*You better believe that we stopped for ice cream on the way home!

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DC’s favorite day of camp, Hat Day. I tried to talk him into the chicken hat, but he wasn’t going with it. He chose the green hat. He chose this hat because it had the long strings that are like long hair to him. There is nothing he wants more than to have long hair, but unfortunately his hair grows out and not down. He wore the hat. He won an award. Above all else, the morning went so much easier than last year, when I was afraid his favorite day would be ruined. Much easier….

From 2015:

Hat Day

Today is DC’s first full day at camp. He has attended this camp since he was 5 years old. He loves it. Before he left the school system at age 21, he was able to attend 9 to 3 every day for 7 weeks each summer. Now that he has a “job”, he normally uses some of his allotted vacation time to attend for two weeks of the season. He does and has always been able to attend the twice weekly after camp program.

He attended when he was at the camp full-time and still attends now after work. Because we took an extra vacation this year, he was not able to take an extra two weeks off to attend camp as he usually does, so I opted for him to go one day a week on Friday in addition to the two “after camp” sessions that do not interfere with his work schedule or his time off. This works out well because I am off from work on Fridays for the summer and I don’t have to figure out and schedule how he will get there each day.

The camp has what they call “Special Days” (more about that in an upcoming ‘Everything is Related’ post) listed on the calendar. Because of DC’s schedule he has missed one of his favorites, Hat Day (or “silly hat day” as DC likes to call it) for the past 3 years. He still has every single construction paper award that he has ever won for his hats on Hat Day and he is very proud of them.

Today happened to be Hat Day. As soon as DC discovered that he would be at camp on Hat Day, it was all that I heard about. We went through his collection of silly hats and he chose the cheeseburger hat.

We arrived at camp and he got himself situated. Although the director and assistant director are aware of his seizure, I wanted to stress again the fact that I really believed it had to do with the heat and the all-around stress of the day we had that day. I also wanted to talk to his group leader personally.

We were a bit early so the staff was still in their morning meeting. DC decided that he had to use the restroom. He came right out and informed me that there was no toilet paper.

(for someone who was so uncomfortable writing a post about toilet paper that I had to use a code word – ‘paper towels’, I do get that it is odd that I am writing a post about it again)

I got him a big handful from the lady’s room and he went back in, no problem…. or so I thought. When he came out, he would not let go of the fact that there was not toilet paper in the men’s room, even though he didn’t need it any longer, it wasn’t there. I told him that I would let the director know as soon as they were finished with their meeting – but he would just not calm down about it.

When the meeting was over he came with me – still ranting – to talk to the director. First I explained to her that what was going on right then was because there is no toilet paper in the rest room. She immediately called to one of her staff to replenish the supply. This did not do a thing to calm him down. It was too late. This coupled with his normal ‘arrival anxiety’was too much and even when I showed him the new rolls, it didn’t matter, he was too far into this now. It went on for a while.

When he finally did calm down about that, he moved right into his normal routine of obsessing about me.

As many times that I have told him over the years that he has nothing to be sorry about (and as many times as I told him this morning), this is what happens. If we are home together, this could and has gone on for hours. If I am dropping him off somewhere, I try to just get him calm enough so that I can leave, because if I am there he will continue to perseverate on me.

I was worried and having seizure flashbacks because it was hot and now he was upset, so I was afraid to leave when I normally would have. He finally did calm down to the point where I felt comfortable leaving – not to say I feel comfortable leaving him anywhere since the seizure, but as comfortable as I can be now-a-days.

As I was leaving he moved on to obsessing about whether I was going to come back and when I was going to pick him up. This is his regular obsession – I do not know why – I have never been so much as a minute late in picking him up anywhere, ever, but it has always been a thing with him.

Now that he had moved on to “Mom is coming back”, his regular routine, I was sure it was safe to leave.

I hope his anxiety this morning does not ruin “Hat Day” for him. Fingers crossed that he comes home with that construction paper award today, because that will most certainly fix everything.

***********************

and later ……

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I wrote about the passing of my step-father and DC’s understanding of the situation in an earlier post (Understanding Death is not like a Disney Movie). Not to diminish how difficult it may have been on anyone else, but this was a very difficult time for DC and this blog for the most part is about DC and the way his autism affects him and his life. It is about the way we go about things and the way he handles situations.

I have said before that I do not always look for accommodations for DC – I want him to try everything. There are times when the “regular” way of doing things need to be adjusted a bit.

If he needs to stand in the receiving line with me, then he does.

Everything does not have to be done “by the book” or the way it has been done for years. Adjustments can be made and those adjustments should not be looked upon as failure. I understand that people who do not know any better actually think we can “train” our kids to do everything the way that they think it should be done or the way it has always been done or better yet, we should be able to train our children to control themselves at all times. No, but we can try to help them manage situations and manage the anxiety.

It helps him. I will try to find a spot where his flapping will not cause damage to anyone or anything. Letting him do these things helps him to calm himself down. Keeping him from doing these things to release his anxiety will only cause something more epic or disruptive later when he just can not control himself any longer.

Knowing my son, I decided that it would be easier on him and everyone in attendance, for him to stand in the receiving line with me at the wake on Friday. Yes, it would be a lot of pressure and hours of people shaking his hand or hugging him but I thought that might be easier than having him sit with Doug with nothing to do for hours. This was a brand new situation for him and I know my son. If sitting away from me, eventually he would begin yelling “Vickie*, come here please” or running through (trying to, anyway) the receiving line to get to me. If he couldn’t get to me or was redirected from trying to crash the line, he could have gotten quite loud. Standing with me in the line was definitely the lesser of two evils. If it got to be too much for him, Doug was there to take him outside for a break if need be. Because she gets it, my friend Carrie actually thought to bring him a few Kit Kats when she came through the line.

If he needs to eat Kit Kats in the receiving line to help get him through this, then he does.

I have to hand it to him though; he didn’t even try to open one until there was a lull in the line.

I have to say that he did exceptionally well. I could see that it was difficult but he held himself together. He was a bit agitated but really pretty much in control. Of course, he had to work hard to stay in control and he was very relieved when it was over.

Knowing how much he fought to keep himself together and what his reaction would be going back into the same situation the following morning, I talked with him at length about what would happen the next day. I explained that we would have to go back to that same room in the morning but we would not be there very long before we got back into the car to go to the church. I knew going back there was going to be very difficult for him. DC really does not have a great sense of time, so explaining that we would only be there for an hour does not really mean much to him – a little while, and not very long, seemed the way to go. But as much as he seemed to be listening to me and understanding, I was very worried about the next morning.

On Saturday morning, the family met at the restaurant where the reception would be held later, to meet the limo. He began to get anxious as soon as we got into the limo and the rain only added to his anxiety. I told him to do whatever he had to do while we were in the car – flap, yell, whatever. He did not want to hear any of it. He was in full blown anxiety mode before we even made it through the door of the funeral home. I asked him if he wanted to sit with Doug – he didn’t. He wanted to stay with me, but he could not control himself. I took him out to the lobby to let him get it out of his system – I asked him if he needed to flap – “NO”, I asked him if he needed a hug (more for the pressure than the actual hug) – “YES”, but it did not help. Each time he said he was ready and we went back in, it began all over again and back out to the lobby we went. We were still in the family only viewing part of the morning before the general public came in. For me, his “semi-meltdown*” would have been much easier if it had happened in a room full of strangers rather than just family (if that makes any sense). Over and above my growing anxiety over trying to keep him together, all I could think about was we were now trapped there without a car. What if he just could not pull himself together? I began thinking about our options to get back to the car during the second time-out in the lobby. Thankfully by the third lobby trip he seemed to begin calming down and we were able to go back inside for the duration. Once again,

if he needed to be in the receiving line with me, then that is where he was going to be

and if he needed to have his “Babes in Toyland” book with him, then that is what he needed to have.

He made it through the viewing and we got back into the limo to go to the church, still anxious, but he was able to control himself for the most part. The cemetery in the rain was not easy but we were not there very long. Arriving at the restaurant and seeing that our car was still there made him feel much better, less trapped I think and he was back to his old self.

This was a long couple of days for him and I really debated about going to my mother’s house on Sunday. Once again I did not listen to that little voice in my head and we went. He was already on the edge. Then came a comment “smiles and ice cream”, which led DC to believe there was ice cream. After convincing him that there was no ice cream, next came the insinuation that pizza was part of the food order that was going to be picked up. Although dinner had been ordered and was waiting to be picked up, pizza had never been part of that order. Was this supposed to be funny? A Joke? I can not even offer an explanation about this but not only was there no pizza, but there was not one single thing that he would even think of eating…. That was the end, the very end. He’d had enough. This “semi-meltdown*” was worse than the morning before.

People who are not around him on a regular basis are often surprised when/if they happen to witness an outburst but they happen all of the time, maybe not to this extreme anymore, but they do. His behavior was actually a surprise to the people in the house.

Really?

THIS IS AUTISM!*

I have never tried to mold him into someone else’s idea of “normal”. I have spent years trying to help him navigate situations in a way that he can handle without too much anxiety and disruption to others. For those who did not get the memo; there are going to be outbursts and times when he just simply can not control himself. THAT IS AUTISM! This was more extreme than usual but it is certainly not something that has not happened before. He knows what is happening and he knows he can not control himself, which only adds to his anxiety and makes him feel that much more worse. Keeping him from doing what he needs to do to get over it also makes matters worse. Unfortunately he was past the point of hugs (pressure) and flapping.

Then came the full sentence with correct pronoun “I just want to go home”. Asking to leave Grandma’s house is a very big deal for him. It is not something he would normally do, ever. But I got a full sentence with the correct pronoun. I knew he was serious… so that is exactly what we did.

He had a very difficult time the following day (Monday) and the next, especially in the morning. In other words, the mornings were brutal. By Wednesday we were pretty much back to our normal morning issues but not anything close to what we had been through during the days before.

I am sure that in addition to the anxiety of a whole new experience and a very long weekend, he also has many feelings and emotions about his Grandpa’s passing that he is not able to express. We talk about it often and I hope that if he does not completely understand, continuing to talk about it will help him understand eventually.

*****

*Vickie – Yes, DC does call me Vickie at times. He knows that he is an adult and assumes that he should call me by my “adult” name.

*Semi-Meltdown – I use that term because DC hasn’t had an actual full blown meltdown in years. I can only compare to what his meltdowns were like when he was younger and in comparison, this was “semi”. Although I did not go into detail about his actions, it was getting to be very close to the full meltdown.

*THIS IS AUTISM – This is HIS Autism. As the saying goes: “If you’ve met one person with Autism, you’ve met one person with Autism”

*You better believe that we stopped for ice cream on the way home!

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I had to take DC for bloodwork for the second time ever, this week. Because of his seizure medication, bloodwork will become a regular part of his life. I am thankful that due to the type of seizure medication that he is on, he will not have to go for bloodwork every month or even close to as often as some of his friends do – small favors. After all of the chaos during his last visit and even though he realized in the end that it did not hurt at all, I was worried that the ‘not hurting’ part was not going to be what he remembered. The ‘needle’ part is what makes him anxious.

I put his bloodwork off for a couple of weeks because I was scheduled for a physical myself which normally includes bloodwork. I was hoping that we would be able to go together so he could watch me and see that there is nothing to be afraid of.

We talked about it for weeks. I reminded him that it did not hurt. He seemed relatively calm – until we arrived and were in the waiting room. His reaction was just like, if not worse than it was the first time.

The people at the lab were nice enough to let us go together. I wasn’t sure if they remembered him from the last time or if it was just about him losing it at the reception window, or both – but they obliged.

Still, I was not sure if me going first was THE best way to go. I was on the fence. This could go very wrong. On one hand; he could watch me and understand that it does not hurt – on the other hand; THE NEEDLE – he would be watching the needle.

I was still debating in my head when we were called inside and at the last second I decided to go first. He watched every move the lab tech made very intently. He was interested, not fearful at all. When it was his turn, he sat in the chair and insisted on watching the whole thing. He saw the needle and he watched the whole procedure without making a sound. Even with all of the prep beforehand and watching me, I never thought it would go that easily.

The second they were finished, he lost control – jumping, stimming and yelling. Maybe it took a lot out of him to keep himself in control for the needle and he just had to let go when it was over, I don’t know. I do know that even with the before and after commotion, this time was so much easier than the last.

In my opinion, his “Sir DC the Brave” title remains firmly intact….

*****

From August 2015:

“They call me Sir DC the Braaaave”“and history someday will rave…….”

DC had to go for blood work today. He has never had to have blood drawn before. They did take blood in the ER after his first seizure but he was so “out of it” that he did not give them a problem about it at all.

DC has always been very healthy so his doctor and I had decided to put off blood tests unless it was necessary because having blood drawn would entail making an appointment at the hospital to have him put out – an all day affair. He is big and he is strong. Even when he was younger and had to have a vaccination, I had to bring reinforcements to the Doctor’s office. Most of the time we had, his Dad, Doug, me, the assistant and the doctor in the examination room. No one could hold him, no one. It was exhausting and even with all of us trying to hold on to him, the doctor would eventually have to resort to chasing him around the room until she had a semi-good shot at sticking him. I often wondered if he ever actually got everything that was in the needle.

Well, we could put if off no longer. Due to his seizures and medications, he had to have blood drawn. He did let the paramedics put an IV in during his second ride to the hospital and he was much more alert that time. Hoping that he remembered this, I decided we would try to go to a regular lab. I talked to him and explained what they were going to do. I also explained that if he did not let them take the blood at the lab we would have to go to the hospital to have it done. He did NOT want to go to the hospital again.

He was all right until we got to the waiting room at the lab. He was in full-on anxiety mode – yelling “I do believe in fairies, I do believe in fairies, I do believe in fairies.”,jumping up, yelling and making his noises quite loudly.

We got him into the drawing room and into the chair and at this point he had calmed down enough that I really thought we would be able to do this – until he saw the needle.

Let the battle begin.

The technician called for back up and fortunately Doug had come with me as reinforcement. Still no one could hold him. It had gotten to the point where as great as the staff was, I knew they could not do this much longer. They gave it one last try with Doug actually laying across his free arm and all of us holding the “needle arm”. As soon as he saw the needle go in he stopped fighting and let them finish. Sometimes the anticipation is worse than the actual event.

He was fine. He was proud of himself. “I did it! I did it!”

When we walked out of the room all eyes were on us from the now very crowded waiting room. I am sure they wanted to see who had been causing all of that commotion. I could not care less. He did it and that was all that mattered. DC, with a wave and a smile yelled “Good-bye Ladies” and we were off.

In the car on the way to breakfast before heading to work, DC was so proud and not wanting us to forget it, began singing a song. I recognized it from when he was young, but I hadn’t heard it in years. I could not even remember where it came from:

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It has been a little bit of an odd week here in DC-land. Some plusses but just all around odd. At this point even the positives worry me since he began having seizures. Right before both he was hyper-aware and oddly communicative. I just haven’t relaxed enough yet to take the positives as totally positive. So, I worry.

On the plus side, he tried and ATE zucchini! TWICE! – That is MAJOR!

Most of the “oddness” we’ve encountered this week are not out of the ordinary things they just seem to be elevated.

I know I’ve written previously that DC does not cry – never has. When he hurts himself or is upset, he will yell or scream, but he never cries. Even as a baby his crying was more like screaming and he really never had tears. To this day, it is very rare for him to have tears. When he does, it is usually due to allergies and still even with allergies, tears are rare. He will at times use water to make tears so he can look at himself in the mirror and see “tears”.

He started taking seizure medication back in August with really no adverse side effects except for one day about 3 weeks in, he was watching a YouTube video and just started bawling, uncontrollably complete with tears and “ugly cry face”. This went on for a good hour. When I asked him what was making him sad, he said it was the Barney song.

(If anyone should be crying over the Barney song, it should be me. I have had to listen to that song for 24 years now. He’s been watching that show since before it hit PBS, back in the days when Barney was dark purple (and a little scary looking, if you ask me) and Sandy Duncan played Michael’s mother. Yes, I am still looking for that Barney support group.)

I chalked the crying up to the meds and I did inform his neurologist. It never happened again, until this week, when three times he went into the same over the top crying, like “overly emotional” me crying over a Hallmark commercial.

Each time he said it was because of the Barney song. The last time he did also say that he missed his Aunt Kim, who he is going to visit tomorrow. Now I have to wonder if it is/was a side effect from the meds why did it happen 5 moths ago and not again until this week?

****

Mrs. H reported that on Friday, he came home from work out-of-sorts which seemed to stem from his immediate need to change his shirt. He couldn’t wait. Now clothing issues are ongoing here, but as annoying shirts go, this one really shouldn’t have caused him that much anxiety. Years ago, yes – but really not so much anymore. It was just a plain black shirt, no buttons, no pockets, no collar, no tags – pretty much, a long sleeved t-shirt, but it had to come off… immediately.

****

Today DC and I went to meet my mother for lunch. We were going to an Italian restaurant that we have been to a few times before. DC always has a hard time finding anything to eat there. They do not have even one item on “DC’s Restaurant Triad” – Burgers, Wings or Pizza, so I have to plan ahead when we go there. I have to remind him more than once and check the menu on-line after which he chooses mozzarella carrozza (but we must call them mozzarella sticks, even though they are triangles) and garlic bread also with mozzarella – always.

At the restaurant; his order placed, he heard me order grilled chicken and insisted on having grilled chicken as well! Now, this ‘boy’ loves chicken. He eats chicken just about every day, but it has to have bones. “Chicken with bones and sprinkles” (Mrs. Dash) or wings or tenders (tenders are not required to have a bone). He never wants chicken without the bone unless they are tenders. This…. another MAJOR plus in my book – a fourth menu option!

****

The minus… He got very anxious at lunch, which is not really all that uncommon. He said he needed to “flap his wings”. The restaurant was not busy and there was no threat of him hitting anyone with his flapping so I said it was fine but to try to keep the ‘clucking’ at low volume. He did, but I could see that it wasn’t working for him. I asked if he wanted to go outside for a bit. First he said no, but then he decided he would since he was done with his appetizer and the rest of our food had not arrived yet. Normally, he would think he was being punished if I asked him to go outside – I always tell him that this is not the case but that is what he thinks, so I was surprised that he agreed.

There we stood, on the sidewalk in front of the restaurant clucking and flapping. The clucking was even more intense than usual. The only way I can describe it would be that it looked like his head was motorized. I do not know how he was doing it. I have never seen such extreme clucking. We stood outside for a good long while until he decided he was ready to go back inside. We were not inside for very long before he decided he needed to go out again. More flapping more intense clucking. Eventually he calmed down and I could see a bit of a smile on his face so I knew this would probably be our last trip outside. We went back in and he was fine for the remainder of our time there.

He had a hard time; the minus – but really the plus side is that he agreed to go outside and he decided for himself that he needed to go back outside the second time.

****

I know that these incidents may not seem like a big deal to many of you. Years ago, all of the above would have been much worse but we are over a lot of that now or I should say that it all comes in lesser degrees now, so all of it combined plus the continuous repeating of random words as if the needle is stuck on a record and the out of control over the top laughing is making me nervous that he is gearing up for something.

He will be going to visit his aunt tomorrow. This will be the first time (other than when he is at his job, with “trained professionals”) that he has been anywhere without me, Mrs. H or Doug since his seizures started (our world has gotten much smaller) and given his odd behavior this week, his poor aunt will have to listen to pages of instructions tomorrow when she picks him up. Fortunately, she is used to me.

Over the years as I gave my lists of instructions to his Dad (I’ve always had many instructions even before the seizures), more than once he’s asked, “You think I am stupid, don’t you?” ……………………………………..

To the many other people who have had to listen to my barrage of instructions, I will say, No, I don’t think you are stupid. Yes, I know that you probably know all of this. On the slim chance that there might be one little thing that you do not know, I am going to say it. I will not feel better unless I say it out loud even though I am sure you probably already know it.

He is excited to go to his aunt’s tomorrow and I am sure he will be fine. I have every confidence that she is ready for my list and that there may be a quiz 🙂 –

Just kidding, no quiz…. maybe just on oral exam…

Yes, I am very fortunate that she has had many years to get used to me and is able to put up with me.

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DC had to go for blood work today. He has never had to have blood drawn before. They did take blood in the ER after his first seizure but he was so “out of it” that he did not give them a problem about it at all.

DC has always been very healthy so his doctor and I had decided to put off blood tests unless it was necessary because having blood drawn would entail making an appointment at the hospital to have him put out – an all day affair. He is big and he is strong. Even when he was younger and had to have a vaccination, I had to bring reinforcements to the Doctor’s office. Most of the time we had, his Dad, Doug, me, the assistant and the doctor in the examination room. No one could hold him, no one. It was exhausting and even with all of us trying to hold on to him, the doctor would eventually have to resort to chasing him around the room until she had a semi-good shot at sticking him. I often wondered if he ever actually got everything that was in the needle.

Well, we could put if off no longer. Due to his seizures and medications, he had to have blood drawn. He did let the paramedics put an IV in during his second ride to the hospital and he was much more alert that time. Hoping that he remembered this, I decided we would try to go to a regular lab. I talked to him and explained what they were going to do. I also explained that if he did not let them take the blood at the lab we would have to go to the hospital to have it done. He did NOT want to go to the hospital again.

He was all right until we got to the waiting room at the lab. He was in full-on anxiety mode – yelling “I do believe in fairies, I do believe in fairies, I do believe in fairies.”,jumping up, yelling and making his noises quite loudly.

We got him into the drawing room and into the chair and at this point he had calmed down enough that I really thought we would be able to do this – until he saw the needle.

Let the battle begin.

The technician called for back up and fortunately Doug had come with me as reinforcement. Still no one could hold him. It had gotten to the point where as great as the staff was, I knew they could not do this much longer. They gave it one last try with Doug actually laying across his free arm and all of us holding the “needle arm”. As soon as he saw the needle go in he stopped fighting and let them finish. Sometimes the anticipation is worse than the actual event.

He was fine. He was proud of himself. “I did it! I did it!”

When we walked out of the room all eyes were on us from the now very crowded waiting room. I am sure they wanted to see who had been causing all of that commotion. I could not care less. He did it and that was all that mattered. DC, with a wave and a smile yelled “Good-bye Ladies” and we were off.

In the car on the way to breakfast before heading to work, DC was so proud and not wanting us to forget it, began singing a song. I recognized it from when he was young, but I hadn’t heard it in years. I could not even remember where it came from:

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Today is DC’s first full day at camp. He has attended this camp since he was 5 years old. He loves it. Before he left the school system at age 21, he was able to attend 9 to 3 every day for 7 weeks each summer. Now that he has a “job”, he normally uses some of his allotted vacation time to attend for two weeks of the season. He does and has always been able to attend the twice weekly after camp program.

He attended when he was at the camp full time and still attends now after work. Because we took an extra vacation this year, he was not able to take an extra two weeks off to attend camp as he usually does, so I opted for him to go one day a week on Friday in addition to the two “after camp” sessions that do not interfere with his work schedule or his time off. This works out well because I am off from work on Fridays for the summer and I don’t have to figure out and schedule how he will get there each day.

The camp has what they call “Special Days” (more about that in an upcoming ‘Everything is Related’ post) listed on the calendar. Because of DC’s schedule he has missed one of his favorites, Hat Day (or “silly hat day” as DC likes to call it) for the past 3 years. He still has every single construction paper award that he has ever won for his hats on Hat Day and he is very proud of them.

Today happened to be Hat Day. As soon as DC discovered that he would be at camp on Hat Day, it was all that I heard about. We went through his collection of silly hats and he chose the cheeseburger hat.

We arrived at camp and he got himself situated. Although the director and assistant director are aware of his seizure, I wanted to stress again the fact that I really believed it had to do with the heat and the all-around stress of the day we had that day. I also wanted to talk to his group leader personally.

We were a bit early so the staff was still in their morning meeting. DC decided that he had to use the restroom. He came right out and informed me that there was no toilet paper.

(for someone who was so uncomfortable writing a post about toilet paper that I had to use a code word – ‘paper towels’, I do get that it is odd that I am writing a post about it again)

I got him a big handful from the ladies room and he went back in, no problem…. or so I thought. When he came out, he would not let go of the fact that there was not toilet paper in the men’s room, even though he didn’t need it any longer, it wasn’t there. I told him that I would let the director know as soon as they were finished with their meeting – but he would just not calm down about it.

When the meeting was over he came with me – still ranting – to talk to the director. First I explained to her that what was going on right then was because there is no toilet paper in the rest room. She immediately called to one of her staff to replenish the supply. This did not do a thing to calm him down. It was too late. This coupled with his normal ‘arrival anxiety’was too much and even when I showed him the new rolls, it didn’t matter, he was too far into this now. It went on for awhile.

When he finally did calm down about that, he moved right into his normal routine of obsessing about me.

As many times that I have told him over the years that he has nothing to be sorry about (and as many times as I told him this morning), this is what happens. If we are home together, this could and has gone on for hours. If I am dropping him off somewhere, I try to just get him calm enough so that I can leave, because if I am there he will continue to perseverate on me.

I was worried and having seizure flashbacks because it was hot and now he was upset, so I was afraid to leave when I normally would have. He finally did calm down to the point where I felt comfortable leaving – not to say I feel comfortable leaving him anywhere since the seizure, but as comfortable as I can be now-a-days.

As I was leaving he moved on to obsessing about whether I was going to come back and when I was going to pick him up. This is his regular obsession – I do not know why – I have never been so much as a minute late in picking him up anywhere, ever, but it has always been a thing with him.

Now that he had moved on to “Mom is coming back”, his regular routine, I was sure it was safe to leave.

I hope his anxiety this morning does not ruin “Hat Day” for him. Fingers crossed that he comes home with that construction paper award today, because that will most certainly fix everything.

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“Arrival Anxiety” – that is what I have always called it. It is, in my mind the best way to describe it.

It does not matter where we are going or how often we have or haven’t been there – it happens. I see the change in his demeanor immediately. It happens so quickly – like walking though a door; on one side he is happy and the other side he is full of anxiety.

I always dreaded the birthday party invitation when he was little. The first half hour, sometimes more, was spent trying to calm him down. No matter how much I tried to prepare him beforehand he would scream, cry, flap and resort to very loud noises. Everyone stared and the other children would huddle with their parents because they were either afraid, nervous or both. He would, most of the time eventually calm down, but how I always dreaded our entrance.

After awhile, I realized that the mention of a party meant “cake” to DC. He was expecting cake – as soon as he arrived. He didn’t understand why he had to bowl or play games, he was only there for the food. Once I realized this, I just stopped calling these events we had to attend, parties. We were going bowling or to the play scape or to someone’s house or a picnic. Believe it or not, this helped a great deal with his “birthday arrival anxiety”, it still happened of course but it was not as severe. Afterwards when we talked about the party and whether he had fun, I would then refer to it as a party in the hopes that he would at some point realize that yes, it was a party, there was no cake at the door, but he had a good time anyway.

I remember being invited to my friend’s house for her daughter’s graduation party. Again, this was not going to be described as a party, I called it a picnic. We were there for a good while before DC saw one of the table cloths (a party table cloth). I saw his eyes widen and he signed “party” with a question on his face as if he were asking “Is THIS a PARTY??” – fortunately by that time, it was time for cake. Eventually he did begin to understand that a party meant more than just cake and our arrivals were not so traumatic.

This “arrival anxiety” continues today, of course not as bad as when he was younger but he still has an immediate change in personality, temperament and expression upon arrival to almost anywhere. You might think he is anxious about places he doesn’t want to go, or places he’s never been and yes, those are some factors, but his highest level of anxiety happens when we are going to places he loves to or has been looking forward to going.

Part of this is just anxiety, plain and simple but as with the earlier birthday issues a lot of it is about the fact that DC always has an agenda in his head. Whether or not I hear about the agenda over and over again, I know it’s there.

At the times when we are going to places he really loves, like Disney or New York City, I do hear about his agenda for quite awhile before we arrive. He’s excited all the way there and the anxiety kicks in the moment we arrive. His face changes and he begins spewing random words or phrases – “Another one, Another one” or “Froggy, Froggy, Froggy” or whatever the random word of the day might be. He gets himself so wrapped up in his head about what he wants to do and is in such a hurry to do all of it that he just can’t control himself.

Last week we went to New York City for his birthday. We park in the same parking garage every time we’re there because it is pretty much centrally located and walking distance to all of the places he wants to go. Each time, as soon as he gets out of the car he begins yelling out his random words, clenching his fists and making his loud noises. An observer would really think that he hated being there. He does this all along the route to Times Square or whatever our first stop might be. I was impressed that on our trip that weekend the “arrival anxiety” was quite minimal and he was over it by the time we left the garage. One step forward…

Yesterday afternoon I told DC that we would be going out to eat for dinner. I never mentioned where and he never asked. When we arrived at a place in town that after 21 years living here we’ve never been before (I was always under the impression that it was a bar until we received a gift certificate for dinner), DC was upset and the whole routine began and continued for an extended period of time – even after he discovered they had all of his favorites on the menu. Doug could not understand why he was reacting this way, we’ve been to new places before – often. Again, I think that when he heard we were going out, he had a few ideas in his head about where we would be going. He often has ideas about where we will be eating, usually more than one. If by chance we do not go to one of the places he had in his head, but it turns out to be a place he knows, there is no problem. Or…. if I tell him the name of a new place, there is no problem. This was not one of those times. It was not a place in his “mind file” and it was not an alternate restaurant that he knows he likes but just didn’t think of. It was new.

He did order all of his favorites (all of them) and eventually had a ‘wonderful time’(DC-speak). I am sure he would be happy to go back again sometime.

Because I neglected to tell him that this was a place he’d never been before (my fault) , I will rate last night as only 1/2 a step back.

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DC and I attend many events, activities and parties. Many related to his autism or specifically geared to special needs children and adults, many are not. Although I do write about some of these events or trips, I certainly do not write about all of them as, in most cases, there is nothing significantly related to DC and his autism to write about. This event was not going to become the subject of one of my posts; it had nothing to do with Autism, there would be no princesses, no wizard, no costumes, no bookstore – just DC, my mother and I attending a fundraising event hosted by an old friend of mine.

After attending, I do feel the need to write about it, and write about it from the perspective of DC and his autism and how, at times people really do go out of their way to make DC comfortable.

An old friend of mine invited us to his annual fundraising event. We could not make it last year, I can not remember why, but we were available to attend this year. We invited my mother to go along with us. Knowing full well that a sit-down-dinner at a table with probably 6 to 8 other people would be tough for him (and me), I tried, as I always do, to relate* the event to something of interest to him.

Tony Orlando, The Honorary Chairperson, would in attendance. Now, I am old enough to know who Tony Orlando is, but I didn’t know how to relate him to something in DC’s world. There have been many times where I am surprised by who DC does know. Usually I find out that they are “the voice” of a character in one of his movies. I checked on-line to see if Tony Orlando might have been the “voice of” anyone DC might relate to. He was not. But then I realized that whenever we hear “Knock three times” on the radio, I make DC sing along with me. We’ve done it enough times that he does now recognize the song. It is also one of the few songs that DC does not say, “Mom, please STOP singing!”

First hurdle, relating this event to something in his world – check!

The event was being held in the midst of our Halloween party season. We had already attended one party and we had a few more on the schedule in the next few days. The event’s description indicated that it would be a 40’s style gala. I did not know what that really meant but I went out and purchased a 40’s style men’s hat to go with DC’s suit.

Second hurdle, turning the event into a “costume party” – check!

My greatest concern was the seating arrangements. As I talked about in an earlier post, there are not many things that we avoid because of DC’s autism, but we do try to avoid situations where we will be seated at a crowded table with strangers. There are times when it can not be avoided, and we get through it, but if I can avoid it, I will.

I am usually not a big fan of eating in the dining room with DC. The tables are crowded with strangers. I get anxious because DC, although pretty well-behaved in restaurants, can get a little bit loud and chewing with his mouth closed does not come naturally to him, he has to be reminded continuously. When he does remember on his own, he feels the need to point it out to me throughout the entire dinner. He likes to bring a book with him whenever we go out to eat, but at these crowded tables, it is not always possible, there just isn’t enough room.

I was never of the mind that other people should be made to just accept DC’s behavior. Yes, if I am trying to manage the situation I can live without the stares and comments – but letting him do whatever he wants in the name of awareness, is not something I ever subscribed to. I do not believe that every behavior can or should be blamed on his autism – it is never used as an excuse.

I was told that I had to e-mail someone for reservations before purchasing tickets. I am not one that ever asks for special treatment or accommodations for DC, but since I had to send an e-mail, I decided I would just mention that DC tends to get a little bit anxious in crowds and if they happened to have a table that was not full; would it be possible to be seated there? I didn’t want them to go out of their way or change anything around, I just thought that if there was already such a table available, I would appreciate it if we could be seated there. It wasn’t a deal-breaker, we were going either way, but since I had someone’s ear I thought it could not hurt to ask.

DC has issues with many types of clothing, more-so now than when he was younger, but there is nothing better, in DC’s eyes, than wearing a suit. I suspect the fact that people tell him how handsome he looks is the number one reason – if you neglect to tell him just how handsome he looks, believe me he will bring it to your attention. Add the hat “costume” to his already handsome apparel and he was over the moon.

The very first thing DC noticed upon arrival was the sign for the “Grand Ballroom”. I had not thought of this aspect when looking for things relatable for DC. Not only was he going to see the ‘voice of’ “Knock Three Times”, while looking handsome in costume, but we were going to the “Ball”! How did I miss that one?

We were in the lobby with quite a few others who had arrived a few minutes early. We were told that we had to wait a few minutes as the staff was still in the process of setting up. DC was having the normal anxiety he has upon arriving anywhere. I always know it is coming, he just needs a little time to shake it off. The woman at the door noticed he was having a difficult time, and shuffled us into the ballroom. We were away from the crowd and he didn’t have to ‘wait”. He would have been alright waiting with everyone else, but it would have taken him longer to shake his ‘arrival anxiety’, so I was very appreciative that she let us in.

We found our table. It was the very last table all the way in the corner. It was perfect. DC, who generally is not aware of anything around him in terms of pushing his chair out, getting up from the table without looking to see if anyone is coming or putting his coat on, arms flying outward to accidentally hit anyone that might be in range, had room behind him so he would not bump into anyone else’s’ chair or knock anyone over when he got up from the table. There was no one behind us to bother if he felt the need to get up and dance. We were the only people in the ballroom other than the staff and a few people I assume were with the organization, for quite some time. Not long after, Tony Orlando came down the stairs. I do not like to bother people. DC has had his picture taken with many people over the years but it was almost always as a photo op. I just do not feel right asking people that are not there for that reason, to take a picture. My mother, had other ideas. She reached into her box of ammunition and pulled out the ‘Mom Guilt’….. “Oh you have to!” , “He won’t mind, he’s used to it” (that went on for awhile), she stared at me for awhile and then resorted to the sideways glance, “Now, Vickie” in a tone I hadn’t heard in years, I finally gave in, only under the condition that SHE had to do the asking.

She went over and asked him and of course he said yes. I don’t know what else she said to him, but he was happy to do it.

First, he told DC that he looked like a movie star. You know that won DC over completely. I told him that his friend BB and Mrs. H will be so jealous. (That is usually DC’s line when we go somewhere that he is excited to be, but I decided to use it just as an added incentive to help move him out of his anxiety). Mr. Orlando was very good to DC. They had a little chat and he told DC that they would be “friends forever”, and DC certainly believes they will.

I am officially adding Tony Orlando to the list of people I will always hold in high regard for not only taking the photo with him, but taking the time to actually try to have a conversation with him and making him feel special.

When they began letting all of the other attendees into the ballroom we realized that we were the only people that would be sitting at our table. One of the women that I had e-mailed before we purchased the tickets stopped by to be sure we didn’t feel as if we were being isolated. It was a perfect table and we did not feel isolated at all. We didn’t expect them to go that much out of their way to give us our own table, but I was so glad they did. DC had room for his ever-present book, he was able to get up and dance behind the table when he wanted to. There was a window right there that helped to keep him occupied; he loves to stand and just look out the window. When it got dark outside, the window then served as his own personal mirror. There is no one that loves looking at himself in a mirror or any reflective surface more than DC does, especially that night , while wearing his new hat.

Third hurdle – Not siting at a crowded table – check!

He enjoyed watching the ballroom dancers they had performing. At one point I did take him out closer to the dance floor where he could watch them (and follow along, pretty well, I might add) from the sidelines. He sang along with “Knock Three Times” and they even had pizza bites as one of the appetizers! What could be better!

Forth hurdle – DC’s very limited food list- check!

He had a wonderful (oops) ‘terrific’** time. Fortunately the ‘drop the chocolate, frosted, cupcake strategically down the opening of his jacket’ incident occurred toward the end of the evening; the smeared chocolate all over his shirt, tie and the inside of his jacket did not ruin the entire evening.

I did contact my friend, Joe the following day to thank him and to let him know how much his people went out of their way to make DC comfortable. I appreciated everything they had done.

They have also been added to my list.

*(That “Everything is Related” post I keep threatening to write IS now in progress and will be posted at a later date)

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